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A Hair, Fashion & Lifestyle Blog - By Charleigh Victory

Monday, 10 December 2018

1 Year With Multiple Sclerosis & What It's Taught Me.


Well, technically it's been 1 year and 2 months because it's taken me so bloody long to write this post but here we are.

Hello, hi..

Don't know if you know or anything but I've got MS (lol).

It's funny because now I can joke about it, now I can laugh at myself. Although, of course it's serious and it's a very scary, unpredictable disease.. I'm not AS serious about it anymore.

You can read all about how I got diagnosed here if you haven't read it already.

But yeah, I can't believe a year has passed since being told that I was sick with an incurable chronic illness and that life won't quite be the same again. This time last year, I was just starting my first treatment of choice, Tecfidera. Which actually didn't work for me as I relapsed whilst being on it but also.. I had a major allergic reaction to it which put me in hospital on Christmas Eve.

I then further relapsed in February, my worst relapse yet but I've come a long way since then. I completed my first round of Lemtrada in April of this year, which was awful but I also think it's the reason why I've been in remission for 10 months, so you know.. swings and roundabouts.

Right now, I am doing okay. I am stable, I experience symptoms every single day and fatigue is a bitch but I'm getting through it.

So what has having MS taught me?

First and foremost.. Strength.
I got a tattoo done in the summer, it's on my back and it says "I was not built to break." - A lyric from my favourite Whitney Houston song "I didn't know my own strength" because it's so true. You honestly do not know how much strength you have until strength is all you've got. I remember being so scared on the day I got diagnosed and don't get me wrong, even now I sometimes get a wave of anxiety about the uncertainty of the disease and what COULD happen to me. But when I completed my first 5 days of Chemo, even though I felt like a bag of shit, I was super proud that my body, my inner strength and my mind carried myself through that because it's a lot for anyone to go through, let alone a 22 year old.

Anything can happen.
You know when you were little and all the adults around you would constantly say "life's too short" and you're there thinking "are you serious.." because that was me. I never understood that saying until I woke up one day sick.. and was told that I wasn't ever really going to get better. I was happy, healthy, never smoked, rarely drank and this disease still happened. So, it's true, anything can happen, out of nowhere, at any time.

Everyone is different. Symptoms vary.
If you have MS, your symptoms could be completely different to my symptoms. The way I feel, might be completely different to how you're feeling. They call it the snowflake disease because no two MS patients are alike.

True colours show.
It sounds really cliche but once you go through a life changing experience, you really do see who cares for you and who doesn't. Some of my friends have really pulled through over the last year, have visited me in hospital, have sent me well wishes, have even been to hospital appointments with me and other 'friends' couldn't give two shits lol. But, what I'm learning is that the only people that truly matter, are the ones that are still around. I have everything and everyone I need in my life, right now. P.s - I still haven't heard from ANY family on my biological fathers side (big LOL).

Move whenever you can.
I don't think I will ever take being able to move my legs for granted ever again. I go for walks more now, I try to dance whenever I can because I can't tell you how shit it is to have legs but not be able to use them. During my last relapse, I was bed bound and very weak, so now that I have the strength to stand, I choose to stand tall.

I am my mothers world. 
I will try and write this part without flooding my laptop with tears. My mum has always been the greatest woman I've ever known but since the very first day I got diagnosed (even before that, when we had no idea what was wrong) she has been by my side. She has never left me, she has been to ALMOST every single hospital appointment with me and even when she's not been able to make it (because of work) she has felt an immense amount of guilt. Which she shouldn't feel at all because she's always straight on the phone after, asking me how it went. She deals with my mood swings, she helps me during any relapses or on the days where I'm really struggling physically & mentally. God, sometimes she even washes my hair for me. I thank my lucky stars every single day that I get to be her daughter and even though I may be the one with MS, I'm not the only one in my house who lives with it. My mum and my step dad are my rocks.

Life isn't so bad. 
I mean, I went through about 6 months after my diagnosis, being angry at the world and not believing in any kind of faith anymore. I just didn't understand how something like this could happen to me.. but it did and it has and I'm never really going to get an answer as to why, so I should just embrace it, right? Being diagnosed with MS has been the worst thing to happen to me but ironically, it has been the best thing that's happened to me. I appreciate everything a lot more now, even the smallest of things and to me, waking up every single day, feels like a blessing. It's given me a new lease of life, even on the days when it knocks me for six. I feel like being sick has given me a purpose because I'm able to share my journey with whoever is willing to listen. I feel empowered, I feel brave, I've finally been given the answers that I've been waiting for, for 18 months. So, no, I'm not angry anymore. If anything, I am eternally grateful.

And lastly, I have learnt that I can handle anything that gets thrown my way. MS ain't got nothing on me.

Love, Charleigh x























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